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Welcome San to my blog, please share with my readers a little about yourself:
Hi, my name is San. I'm a 29 year old female from Ontario, Canada and I've graduated (class of 2012!) with a degree in Computer Engineering, and I currently do web design and web programming work on contract, and also for fun.
For hobbies, I'm an avid horseback rider and I've been doing that since I was 11, competitively and for fun. I've had a few injuries along the way, so lately, it's just for fun. I ride English and do hunter and jumper. I “work” at the barn I ride at in exchange for riding and we have a blast. I advocate horse therapy and have volunteered with programs in the past, again, we always had a great time.
I also love crafts. I loom knit, sew (I recently learned quilting), cross stitch (not your grandma's cross stitch, either) but lately, as it's winter here, I've been mostly knitting. It's calming and it's enjoyable. I'm a big geek and I enjoy reading (non-fiction) and spend a lot of time on the computer.
What is your diagnosis?
Bipolar disorder type 1 with rapid cycling and psychosis. Schizotypal personality disorder. ADHD, inattentive type. I'm considered treatment resistant. Some say I have the “schizotypal” but not the “personality disorder”. I think that's a compliment? Personality disorder patients are often treated poorly. It's sad.
What are your symptoms?
Severe depression (at times), severe mania (at times), so your typical bipolar high's and low's. Severe anxiety. Psychosis including auditory and visual hallucinations and paranoid delusions. Inability to concentrate. Anger outbursts. Severe reactions to stress, putting me into mixed episodes, which consist of the racing thoughts of mania, but the negativity of depression. This is, of course, without the right meds, or any at all. Controlled with medications, the symptoms are less, or none. All the time, though, I'm a bit paranoid in social situations, anxious in social situations, but I was bullied as a child.
At what age were you diagnosed?
At 14, I was first medicated for depression, and diagnosed with depression, at 17 I was diagnosed by a psychiatrist with bipolar disorder and later borderline personality disorder because of an overdose suicide attempt. I was diagnosed with bipolar disorder by every psychiatrist I've seen.
What age did symptoms first appear and what were those early symptoms?
Early in life. I've always been low on the pecking list, and was bullied as a child. I remember in grade 4, when I was 10, they did an IQ test, and wanted to skip me a grade, but didn't, because they didn't want to “screw me up anymore socially”. I don't know how that would be possible! I always had anger problems, I was always anxious and moody. The paranoia was built in, automatic reflex from kids making fun and beating me up daily, the school doing nothing about it, even when my parents complained.
Do you take medication to treat your disorder?
Yes, I take Topamax (150mg, still going up, as a primary mood stabilizer), Haldol (5mg, for psychosis), Artane (5mg, for Haldol side effects), clonazepam (1.5mg total daily, for anxiety), Lexapro (known as Cipralex in Canada, 40mg daily for obsessive thoughts and depression) and Ritalin (20mg daily, for inattention)
Do your meds work?
It's taken a LONG time to get to this combo, but knock on wood, yes. My psychiatrist pushes that meds aren't the only part to treatment, that involvement in the community is essential, and groups, therapy, etc, are important. I have a YMCA membership, I'm involved with horses, and I do my web design work. At the moment, he doesn't want me working an actual job.
Do you experience side effects from the meds?
Fortunately, not as severely as from some others. I have tingling in my hands and feet once in a while from the Topamax, a lot of weight loss from the Topamax, decreased appetite and pop (soda) and chocolate taste funny (Topamax again) more sedation from the Haldol, decreased sex drive (oh well) from the Lexapro, sometimes anxiety from the Ritalin. Most of the side effects are from the Topamax: But it works.
What symptoms are the most difficult to treat?
Mixed episodes, where you experience mania AND depression together. Hell on earth! Lithium helped it, but I can't take it, it screws up my kidneys. 1/100,000 person thing called “diabetes insipidus”, even though my levels were fine and I kept hydrated. It went away. Psychosis. Atypical antipsychotics, like Geodon, Seroquel, Abilify, their side effects are awful, and they don't control the psychosis, when a relatively low dose of Haldol does. Anxiety can be difficult because you grow tolerant to the benzos, like clonazepam, Xanax, valium, etc.
Have you experienced psychosis?
Could you tell that you were experiencing psychosis during an episode, or only in retrospect
Now I can, but in the past, I wasn't able to.
Does the psychosis scare you?
Yes, because it's something you can't control or think rationally through, like with a negative thought. I had an episode in 2006 I have massive memory loss from. My mom can tell you about it: I can't. It was horrible. I scared everyone. I still feel awful about it. I know the “warning signs” now so I get myself to my psychiatrist before it gets full blown. But when you have thoughts and hear things telling you people are after you, you caused this person to die, you caused this persons sickness.. it is scary
Can you share with us what psychosis is like for you?
Sometimes I see things in my peripheral vision, like people that aren't there. That isn't too terribly bad, and if I'm wearing glasses, it's easy to distinguish. Other times its bugs in my main vision, which is kind of scary. Those are visual hallucinations. For auditory, I'll hear people talking about me, whispering my name, if I'm out, and there's even one person around. “She did this, and that, and look at her, she's so ugly, what the hell is wrong with her?”
I'll believe people are out to get me, to “take everything I have” (not entirely sure what that means), sort of like a witch hunt. A lot of it is persecution. Very paranoid.
What triggers your psychosis?
Stress, sometimes. Sometimes nothing. Being out in large groups for too long. Being really tired.
What can you do to prevent psychosis?
Med compliance, know when I've had too much, get proper sleep, eat properly be 100% honest with my care team (psychiatrist). I log my moods and episodes and everything.
Have you ever been hospitalized for your illness?
Yes, starting in 2002, and my last hospitalization was October 2013. Fortunately now I have a very kind and patient psychiatrist who has never been angry with me, raised his voice, and he is really good. I like him a lot.
What caused your hospitalization?
Depends on the hospitalization. Generally depression, a suicide attempt earlier on, psychosis once or twice, sometimes I'd voluntarily admit myself before it got to bad, a need for a med change.
The first time it was because I was suicidal and had self injured. My last time, Oct 7-24th, 2013, I was under extreme stress and needed my meds redone. Sort of an oil change. In 2008, it was long term (6 months) for a med change, assessment, and ECT. I've been hospitalized about 15 times, once for 24 hours, once for as long as 6 months.
What was hospitalization like for you?
Scary at first, I've met some good friends, interesting people, and got some good therapy. Sometimes it was useless, sometimes it was traumatic, but for the most part, it helped. My two most recent, October 2013, and 2008, were most helpful. We had groups, and the ECT in 2008 helped a LOT.
Are you glad you were hospitalized?
Yes and no. I wish my illness never got that bad that I needed hospitalization and ECT. I'm glad I was able to get that help. I'm glad I had the support to get stable, get out. After ECT, within a month, I had a job, went back to school, moved out, got a new job, etc. This time I'm taking it easy, as per my psychiatrists suggestions. He saw me at a breaking point when he hospitalized me (it was a two-way agreement, I was doing badly, stressed from a full time job that was supposed to be part time) and he really helped. The hospital had been redone, there were groups, and even a relaxation room with a ball pit!
Yes. I did ECT because I was in such a rut no meds helped my depression, the episode wouldn't end. I was 4 hours from home at college, trying MAOI's, everything, nothing worked. I went inpatient, got transferred to a better hospital (I called it a “hotel-pital”) where I gained weight on my own, nobody had to force me (I was anorexic), and started ECT.
What was your experience with ECT?
I had some memory loss, times around it are fuzzy. It was simple, safe. I woke up with a headache, tylenol got rid of it, I was allowed to skip group and sleep all day. My roommates would even bring me snacks and meals! I did 6 sessions: 1 bilateral (both sides of the head), 1 unilateral. The procedure was done under general anaesthetic, so you don't know what happens, there's no pain. Worst part: the IV, and that's not even bad at all. They'd cover you in warm blankets, the nurses would be around to talk, they'd knock you out, you'd wake up, go back to the psychiatric hospital (it was done at the general hospital) and sleep, or relax. I had no pain, very little memory loss, no permanent loss, no loss of long term memory or any memory I had, and huge improvement. Before my first treatment I wrote all my passwords down, but I didn't forget any of them!
Were you scared to try it?
Yes, but I was desperate. In Canada, you cannot be forced into it, 2 psychiatrists had brought it up, a 3rd evaluated me, said I was a good candidate. You can't take benzos (they lower seizure threshold, the point is to have a seizure, muscle relaxants stop the body from seizing, but the brain must) so there is anxiety before the procedure, but the staff was VERY good and it really wasn't bad. Anticipation was the worst part. And there was no pain. I'd rather do that than go to the dentist, and I really like my dentist!
I think my mom was more scared of it than I was: She grew up with One Flew Over the Cuckoo's Nest, when it was dangerous, controversial (it still is), and used as punishment. It is NOT anymore, it's a relatively simple procedure, done with a trained psychiatrist, an anesthesiologist, nurses and the patient is never left alone. You do wake up disoriented, but I could answer the questions: “Where are you, do you know what just happened? Etc..”
Are you happy with the results?
Yes, my highs aren't as high, I haven't had a true depressive episode that wasn't circumstantial since the ECT. It really worked. If I ever got that low again for that long, in a heartbeat, I would do ECT again. I would request it.
What has helped you manage your illness?
Medications, therapy (group and one to one), the Canadian Mental Health Association (CMHA), ECT, my psychiatrists over the years, psychiatrist nurses in the hospital of course.
My mom, she's helped me a lot, when no one else would. She's gone to bat when no one else would, risked her job to help me. I've had friends support me, but not like her.
Reading a lot, people online, the websites patientslikeme.com allows me to track everything.
Next I had Dr. M, an older man. He put up with me until he retired, same with Dr. A. Dr. A. Was kind of a jerk, too. It's hard to switch psychiatrists in Canada. He retired and left me with no one. My GP, who is fantastic, found me my current psychiatrist, Dr. N, who is fantastic. Dr. N is younger, has newer ideas, listens, but will override me, takes me in in crisis, and a lot of people say “he favours you”. Good, if he does! I don't think he does. I feel comfortable with him. He doesn't make decisions without me agreeing. Even when I was hospitalized.
Funny story from my last hospitalization before I stop rambling. I was on a Form. Technically Dr N admitted me, but there were no beds on his unit, so he sent me through the ER, and they put me in as involuntary against his wishes to “speed things up”. He was not impressed, and as soon as he saw me, he gave me privileges and stopped the involuntary order. But the night before, a nurse tried to give me Ritalin at 10pm! I refused it, and she gave me hell! I tried to explain Ritalin is a stimulant, you don't take it before bed!
I signed the AMA (against medical advice), she told me that my doctor would be “very upset”. The next morning I saw Dr. N and he said, “I see you refused a medication last night.” I said “Yes, Ritalin, at 10pm”. He BURST OUT LAUGHING. He said, “Good thing that you caught that!” (I have trouble sleeping as it is!) and wrote orders for them to never give me Ritalin after 2pm. He didn't yell at the nurses, he wasn't that type, the staff wasn't afraid of him, but I never got my Ritalin after 2pm after that!
I was always told growing up I was “going to go somewhere” and I feel like that never happened. I feel like I've disappointed a lot of people and I'll never be anything. I spent my teenage years miserable and never got to be a teen, never got to have a lot of fun college students had – coz I was in the hospital. I learned a lot and grew up fast, but I am pretty immature. I learned a lot about people, too, good and bad.
How has your disorder enhanced your life?
I can write a lot.. I'm more creative. People say meds take their creativity. I don't think that at all. I've got the connection with my mom. I know a lot about bipolar and meds. I don't know if it has...
What advice can you share with parents who are currently raising kids who have a mental illness?
Just stay by them. Don't give up. Ever. They may need you longer and more frequently than a non-mentally ill child, but they're your child, don't give up on them.
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Thank you so much San for sharing your story with us. Check out my next post when San’s mom shares her experience in Part 2 of my daughter/mother interview.
You can visit San's blog here: